Bed-tethered Lifehacks: May 2020 Update

I love seeing how other people organize things and solve problems. Those what’s in your bag posts? Love them. For bedbound folks, the question is usually, what’s next to your bed? We want to know how folks set up their space for maximum efficiency, and find ideas we can steal for ourselves. I did a post about this last year, and showed how my bedroom was set up then. But I’ve continued to iterate, and thought it was time for a new post. It’s long. The show and tell of what is directly next to my bed is at the bottom.

I have included some links to some products, only in anticipation that some folks might ask. I have no promotional agreements.

Photo of hallway and entry to Rebecca's bedroom
Photo of hallway and entry to Rebecca’s bedroom. The hallway is orange, with visible natural woodwork. The bedroom is red. The bedroom door has greeting card displayed on it.

There are a couple of things to know from the outset:

I wasn’t bedbound when I moved into my home. I would have looked for a different kind of bedroom if I had been. I have not moved my bed to a living room or dining room, because my current bedroom proximity is only 10 steps to the bathroom and the kitchen, and that makes the most sense.

I do have a roommate now, and but lived alone for the five years prior. While she is a lovely human being, our arrangement is that she is a roommate, not that she has helper responsibilities. I have pet care helpers morning and evening. And I’m supposed to have a personal care aide most afternoons, but that situation waxes and wanes. This setup is to support me being alone and self-sufficient the majority of the time.

I spend almost all of my time in bed, but I can get up to use the bathroom and grab things from the kitchen. I try my best to minimize how often I get up, but I can still get up.

I use Google Home to control some of the electric devices in my home. I can do this with voice commands or through the app on my phone. I’m generally comfortable with technology and innovation.

Hallway

Let’s start at the very beginning, as it were: the hall outside my bedroom door. The wooden stool (From a rummage sale) faces my roommate’s bedroom. I can sit down while talking with her. The black drawers are a Hemnes chest from IKEA I’ve had for about six years. The drawers themselves hold all my extra or infrequently used medicines, supplements, first aid, heatable pillows, etc.

On top of the chest is a small desk lamp. The lamp has a wifi multi-color LED light bulb. I can control this light from my phone as part of my smart home system. I currently us it as an alert light; when it is on and red, my roommate knows I’m asleep.

Photo of the door to Rebecca's bedroom
Photo of the door to Rebecca’s bedroom/ There are three rows of greeting cards, hung under a bunting that reads “joy.”l it on my phone from anywhere. I currently use it as an alert light; when is it turned on and red, my roommate knows I’m asleep. 

In front of the door is a heavy velvet curtain hanging on a tension rod. It provides privacy, but also helps with regulating the temperature in my room, especially when I’m running an air conditioner.  I have a door, but I don’t use it very often. That was my animals can come and go as they please.

My door itself, serves as a gallery for greeting cards. I have a number of folks with whom I exchange mail, and they send some really great things! Funny, heartwarming, encouraging, handmade.  It’s just some hemp twine tacked into the door, with mini wooden clothespins on the line to hold the cards. The bunting over the cards reads “joy,” and was made by mother. Since my door is usually open, I can see this from bed.

Food/Beverages/Medicine/etc.

Right inside my door is my food/beverage/medicine station housed in a Billy bookcase from IKEA. It is about three steps from my bed. The bottom holds spare medical supplies, cleaning supplies, and large supplement containers. The middles shelf holds supplements and medications.

I fill my pill boxes two weeks at a time, The white plastic bins hold all my current bottles that I use to fill the pill boxes, as well as the strips for next week (or last week). To the right is a basket full of little vials. A friends helps me out by pre-measuring the fiber supplement I take, and the D-Ribose I use into empty prescription bottles and plastic vials. We store the filled ones in this basket, and the empties in the one to the right of it.  Finally, there is a plastic container that I put small food-related trash in until it gets to the kitchen for emptying.

The top shelf holds food related things. The basket on the left has disposable bowls, plates, hot cups, paper towels and fabric napkins. The basket next to that holds extras of frequently used snacks, like nuts and rice cakes. In infrequently used hot beverages. There’s some oatmeal over there too.

Photo of a black bookcase full of baskets and boxes
Photo of a black bookcase full of baskets and boxes. A water pitcher and an orange electric kettle sit on top.

On top of the bookcase is a bowl with shelf-stable half and half, tea, and containers of instant decaf coffee. Some plastic spoons that I reuse.

I keep an orange electric kettle. This kettle has a simple toggle on/off switch, making it possible to use it in combination with a smart plug. The default state is to have the smart plug turned off, cutting the power, while the kettle power switch is turned on. When I wan to make a hot beverage, I simply tell Google to turn the kettle on. This way, everything is ready to go by the time I stand up.  I can stand up, walk three steps, make a cup of coffee, and sit right back down. While I’m doing so, I just tell Google to turn the kettle back off, and I turn the switch on the kettle back on when I’m done with it. Then it’s ready to go for the next time.

There’s a beautiful glass pitcher that I refill with water every night. That way I have water nearby to refill the kettle, a water bottle, or the humidifier. And every serious spoonie needs a stuffed sloth mascot overseeing things.

On the floor to the left is a humidifier. I run it all the time in the winter when the heat is running. It has over a gallon capacity, and can be refilled simply by taking the lid off. It does not need to be picked up.

The view from bed

I have a large-ish upholstered chair that I love. It is sized so that I can sit in it comfortably while cross-legged. I have a footstool of sorts in front of it, but it not really a footstool. It is a step stool that can be pulled out for use. And on top of it is a meditation cushion.  Both this and the chair double as places that guests can sit when the come to visit.

Photo of Rebecca's room, featuring a black dresser with a large TV.
Photo of Rebecca’s room, featuring a black dresser with a large TV. An upholstered chair is to the right. Marigold, a dog who looks a lot like a golden retriever, lies on the floor looking at the camera.

The floor lamp in this corner is also controlled by Google Home.

My dresser (a Hemnes dresser from IKEA) is the primary surface in my room for displaying things. I have a 43″ television, which is also part of my Google Home setup, has Android TV and Google Chrome installed. I can cast things to it from my phone, tablet, computers, which means that in addition to TV and movies, I can cast say, a concert happening on Instagram Live. There is a wooden sign inspired by one of Glennon Doyle’s favorite sayings, “we can do hard things.” I have a digital clock here so that I never have to move to know what time it is. A snake plant that needs hardly any light, Some statues, figurines, rocks, etc that have meaning to me. The flowers are all from local gardens, and I get them as often as I can afford, or as friends bring them from their gardens.

Marigold dog rarely poses for photos, so this was surprising. She does, however, spend the majority of her time in here with me.

Photo of a tall black bookcase, filled with books, sweaters and yarn.
Photo of a tall black bookcase, filled with books, sweaters and yarn. The foot of the bed is to the left, A black dresser is to the right.

There’s a fairly large closet next to my dresser where I keep all the shoes I never wear, and the piles of laundry. Not interesting. 😉

There is a tall IKEA Billy bookcase about two feet from the end of my bed. This holds lots of things I don’t need daily, but use frequently. My real camera. Sweaters. Yarn for crocheting. Office supplies, blank greeting cards and stamps. Books I want to reference or hope to read soon. Cookbooks for when I have aide care. File boxes to hold the unending paperwork involved in health care and benefits.

This window is my only window. It faces my neighbor’s siding, which is about six feet away. I have blinds, so I can control a lot about the light and the ventilation.  In the spring and fall, I can put a window fan in. I am very sensitive to heat, and use an air conditioner in the summer. I don’t use a window unit. I have a portable unit on wheels. It is much easier to take the hose vent and plate in and out of the window frame. I can open the window from the bottom, put the fan in or take it out, put the A/C in or take it out, all pretty easily. I have a friend who takes it up and down the stairs for me so I can keep it in the basement in the off-season. I mentioned the curtain in my door above, and that really helps keep the cold air in.

At the end of the bed is an old, very solid trunk. It stores spare blankets. But it also serves as a step for Marigold so that it’s easier for her to jump up onto my bed.

The bed

The bed, of course, is where I spend all my time. It’s a queen size Kvalfjord from IKEA that I purchased in 2019. It has a very solid velvet-covered headboard, and storage space underneath. I use the under bed space to store long, plastic under bed boxes of all my sheets and bed covers. They are easy to grab out, and easy to push in enough that I can use my overbed table if I want to.

I have deliberately chosen not to get a hospital bed, but rather to add accessories for positional support. I have two substantial bed wedges that I lie on all the time. I have a sheepskin from a regional farm on top of my fitted sheet, and a pillow i keep under or between my knees. I have plenty of space for the dog and cat.

I eat all my meals in bed on a wooden tray. I carry it back and forth to the kitchen twice a day. It has sides that are just tall enough to keep anything from sliding off. It’s a little heavy, which makes it easier to balance in bed. Using the tray also helps contain some of the crumbs and things.

Bedside Storage

Storage within arms reach is a primary challenge for most bedbound folks. And I have a pretty limited amount of space in which this can happen. You may notice that my bed is recessed into a set back section of wall. there is only about 13″ between my bed and the wall, and only on one side. So I’ve tried to make the most of it.

Photo of Rebecca's bed and various carts to the left.
Photo of Rebecca’s bed from the foot of the bed looking up to the gray velvet headboard. A variety of carts to the left of the frame. The sheets and walls are intense, warm colors.

Directly next to my bed is an old metal cart I found for free on the side of the road. My trash can is stored inside it on the lowest shelf. The other shelf holds a box with all my face wipes and moisturizers, nail clippers, and makeup. I also have a lighted mirror that I can recharge with a USB cable.

The surfaces of the cart is limited, so very strategic choices: My sun simulator alarm clock is never used as an alarm anymore, but a dimmable lamp and a clock. An old letter sorter holds my paper planner, important papers, note paper, pens, pencil, scissors, current use crochet hooks, tablet and the remotes. They all have their own slot and I cannot lose them. A glass dish holds my favorite lip balm, lipstick, nail polish, etc. A tiny little ceramic pinch pot I made as a child holds the earplugs I’m using in a give week.  portable thermometer shows the room temperature. My Google Home mini speaker is right next to my bed. There is enough room for a mug, my phone, and my watch. The charging cords for my USB devices are wrapped around the corner post of the cart so that I can’t lose them and can always reach them. My primary Power strip is directly below the cart.

There is also a three tiered set of wire baskets. it was designed to be hung on the wall, and I previously used it to hold gloves and hats at my back door. But the bottom is flat, and it uses vertical space, so it works well here.

The bottom basket holds moisturizer, nail file, microfiber cloth, eye mask, hand sanitizer, fresh ear plugs.

The middle basket has tissues, makeup brushes, hair brushes and combs, baby podwer, dry shampoo, a spray bottle of water.

The top basket has some medical supplies, baby wipes, and pet supplies – like brushes and calming chews.

A few things are hung off the sides – like a tape roller, my masks ( I wear them during the COVID pandemic whenever others are in my home), a medic alert button, my favorite tapestry needle.

The little wall to the side of my nightstand has a Command Hook mounted to hang my ear defenders. The ones I bought also have Bluetooth so I can use them as headphones when watching TV or listening to music. And a few notes to myself as daily reminders.

Photo from Rebecca's bed, looking to the right.
Photo from Rebecca’s bed, looking to the right. It shows a close up view of her carts and nightstand.

About 15″ from my bed is a 20 x 20″ set of drawers on wheels. This is an elfa storage unit from the Container Store that was originally part of my organizing solution for my art studio. I have a second one that is is my current creation space, and can be wheeled in an out if I want to use it in here. But this unit is here all the time. I *love* how customizable these units are. You can choose size, height, how deep the drawers are, etc.

The surface fills up, then gets cleared, rinse, repeat. It’s usually where people put my mail when they bring it in for me. There is a desk lamp on top  pointed at the ceiling. My room is quite dark much of the time, and I use this when I’m on video calls so that folks can actually see my face. There’s usually a dish for teabags, used spoons, etc. here as well

I use the top drawer for my laptops (I can keep them plugged in this way), my journals, a back up charging brick, my headphones for my phone/tablet, and a bin of paint markers.

The next three drawers are deeper. One holds miscellaneous things I want nearby. The bag I grab if I’m going to leave the house, with my wallet and keys and such. Paperwork I’m currently dealing with. Books I might be reading. a box of earplugs. An extra face mask. I use two of them to hold all my current crochet projects, and my cases of hooks, needles, stitch markers, etc.

Next to the white drawers is a teal cart, one of the ones that every artist on Instagram seems to have purchased from IKEA, myself included. And in fact, it was originally in my painting studio. This cart is on the kind of wheels used for rollerblades. It is incredible easy to move. It often sits in the narrow space between my bed and the white drawers. I use this cart constantly. It holds all my current pill organizers and bottles of meds and supplements, electrolytes, salt, pain relievers, etc.. My toothbrush, toothpaste, and a spit jar with a lid. A little dish I can put my meds into when I take them. A fabric napkin. Current containers of snacks, so that I never have to get up to get some calories. My water bottles and a ceramic tumbler. I use the bottom of the cart to hold recycling, and empty it out whenever the household recycling is going out.

I do have an over the bed hospital type table. I don’t use it nearly as often as others do. I use it for projects, especially for batches of paperwork, or for painting. I often keep it on the other side of my room out of my usual walking path. But during the pandemic it has served an additional purpose, as a coffee delivery system. I have lot of friends who volunteer to help me out with pet care, and who ever has the morning shift is also in charge of making and bringing me coffee. It’s a good reminder that we’re trying to stay 6′ apart. Folks can just reach into my room and put my coffee on the end of the table, then I can just pull the table over to me to grab the coffee.

Photo from Rebecca's bed, looking across the room.
Photo from Rebecca’s bed, looking across the room. Visible are a tray with dishes, the black dresser, TV, upholstered chair.

There you have it! I think. I think I covered most of it. Hopefully this can give you some ideas of things that might work for you. This is just what I’ve iterated too at this point. I’m sure it will continue to change.

I’d love to hear what things have been particularly helpful for you.

Some Coping Approaches for COVID-19

I know folks are feeling scared and overwhelmed with the prospect of social distancing, isolation, possibly even quarantine. Here’s a missive from someone who has experience being housebound. I’ve been mostly housebound since sometime in 2017. As of this writing, I have not left my home at all since October 2019. I need help with the functions of daily living, and have had a personal care aide since February 2019. I get by with the help of friends. It’s OK. I’m OK. But being OK with it didn’t happen overnight. I’m hoping that some words of wisdom from experience might help soothe your soul just a little.

Feelings

Let’s start with feelings.

It’s OK if you feel trapped in your home. If you’re mad that the game was cancelled. If you’re upset that some stupid virus is running all your plans. If you wanted to visit your father, but it’s not safe. If you’re scared. It’s OK if you desperately want to control your situation, and that of people who you love. Its OK if you like being at home and escaping the rest of the world. Its OK if your introverted self sighs a big sigh of relief.

So much of who we are can be wrapped up in our obligations, our activities, roles, identities, that stepping out of them can be uncomfortable, even anxiety producing. There can be very real sadness, disappointment, grief, when we can’t do things we were looking forward to, like a concert, movie, trip. And a whole different kind of distress when we can’t participate in milestone moments for our loved ones, like funerals. Some of you are going to miss graduations, Mother’s Day celebrations, birthday celebrations, weddings. It’s going to be hard.

All your feelings are valid. And the more you pay attention to them, say hi, feel them, name them, and move toward some imperfect acceptance of them, the easier everything is going to be. I promise. Also, I’m not saying its going to be easy.

It stinks.

Also, we can do hard things.

Photo of a dresser-scape, including a sign that reads "we can do hard things."
Photo of a dresser-scape, including a sign that reads “we can do hard things.” Also in the frame are a TV, a snake plant, a large painting of a woman holding an anatomical heart, and a wooden chest displaying special objects.

Humanity and Vulnerability

The next thing we can do is remember that we are human. And that part of what’s happening right now, our move toward social distancing, might feel like it flies in the face of our humanity. We were meant to connect, to hug, to play sports, to go to concerts. And we’re not doing that right now. It feels uncomfortable.

But we’re doing something else that is very human, which is taking care of ourselves, our loved ones and our communities. Nesting.  Pulling our loved ones close. It just might look different than how were using to doing it. And that can feel vulnerable.

Here’s the thing. We are all vulnerable.

On many different fronts, all the time, even if we spend our days pretending otherwise and putting on a mask (literal or figurative). We are. We’re vulnerable to heartbreak, to loneliness, to loss, to joy, to being tickled, to love. And every one of us is vulnerable to getting sick. And while we can, and should, take precautions, we can’t control if we get sick. Just ask the millions of folks with cancer, with chronic illnesses, with congenital conditions.

We can’t control it.

And if we become ill, it isn’t our fault.

So maybe you’re isolating because you don’t want to get sick, or further compromised conditions you already have. Maybe you’re protecting others. Maybe you are sick and you need to quarantine. You can do this.

We don’t need to do it alone.

Most of us already know something about staying connected to folks we are physically apart from. We have more communication tools than ever. Social media. Texting. Messaging. Email. Mail. Video calls. Stay connected to folks you care about, even if you haven’t been in touch for a while. It’s OK to break the ice with a text that says, “Hey. I know it been a while. But I wanted you to know I’m thinking about you.” It’s OK if they think you’re a weirdo popping up out of nowhere. But they also probably won’t.

In my experience, community and support can come from unexpected places. When I became much more seriously ill, some of my regular friends just kept on keeping on right next to me. Some stepped up in big ways. Some close friends totally ghosted me and disappeared. Some old friendships were rekindled. And amazingly, some new relationships began.

Take Stock

So great. We have some feelings and we are staying in touch with our people. But there are so many practical things to manage! Figure out your tools. Slow down and make a list. I like to go back and asterisk the ones that are actually critically important. But everything is important! Maybe. But sometimes things just can’t get done. Focus your energy and resources on what matters most, and what needs to be done first. I never asterisk more than five things. I’ve even written lists of things I am not going to do! Liberating.

Don’t reinvent your organizational systems, unless you have none at all. Then, do the most simple thing possible and make a list in the place you are absolutely most likely to find it when you need to add to it, and find it when you need to reference it. This is likely your phone or a notebook.

Come back to this again when things change, or any time you start to feel overwhelmed. Sometimes just getting it out of your head is really helpful.

Needing Help

Here’s where you start: figure out what you need. Sometimes this is hard. We just feel icky. Or panicked. Afraid. Overwhelmed. Take a few deep breaths and notice how you feel. Then see if you can find the answer. Maybe you need to write. Maybe you need to talk it out with a friend.

Sometimes the is obvious. You need milk. But you can get even more precise, like I need a gallon of either 1 or 2% milk by 10 am Thursday so I can take my pills.

Next, figure out if it is something you have the power to take care of yourself, or if help would be a good thing.

We might need help. Dammit.

What?! I’m independent! I take care of myself. I don’t want to be a burden to anyone else. They have their own things to deal with. They probably don’t want to help me anyway. What if they say no?

Be willing to ask for what you need. This is super hard for a lot of people, and it goes against the grain of our over culture. But it’s exactly what is necessary in community. And most of us say it’s what we want others to do. We want them to ask us. So if we’re the ones in need, our job is to ask them.

Community and Mutual Aid

Identify who you could ask for things. Some folks start here with the answer of “no one.” While I believe this answer can be true, I also believe that it is very rare that it is true. Think expansively. This is the time for the wild brainstorm. The list of everyone you know who isn’t a jerk. Even if it makes you uncomfortable. Once you have that list, you might want to start thinking about ways those different people could help. Over on my Chronically Ill Viral Preparedness page I link to a great little document called Podmapping for Mutual Aid by Rebel Sidney Black.

I have an incredible network of support, and I know I can just throw out something (I need someone to take a package to the post office for me by Friday) and someone will raise their hand. But I also know more specific things about some folks that can make it easier to target my requests to the right place. Like, several folks I know go to the grocery store 3-5 times a week. Those are the folks who can keep an eye out for the specific items I need that are getting hard to find. They might do better than my regular grocery shopper.

I also know who I can turn to for emotional support, and that I can ask for what I need there. I know who I can text and say, hey, I’m having a hard time. Do you have time to connect on the phone for 15 minutes and just listen?

A couple of years ago, a friend shared a poem with my that was written by Tad Hargrave. It really helped my shift my thinking:

how do you create community?

how do you create community?
i do not know
a hundred ways
a thousand ways
but
how do you kill community?
I can tell you one
sure to do the job.

be self-sufficient.

always have enough
always have it together
always be a giver
always have all the tools you need
never need to borrow a sewing needle
never need a cup of sugar
never tell anyone you’re breaking down
never need anyone

your pride
your insistence on competency
your unwillingness to be a burden
on us
when it is the proper time for you to collapse
may be the end of us all
knowing what time it truly is
or knowing how to know the time at all

you
needing our help
being unable to continue without it
you
not knowing
how to do everything
creates the occasion
for the village to reconstitute itself
and know itself again

–Tad Hargrave

 

And let’s talk a minute about need. Need is not a magic threshold you have to hit before you’re so desperate that you have no choice but to ask. Try to set that bar closer to when you have a longing. A sense of something. A realization. When you start to worry just a little. This is not an exercise in stoicism. A major form of self-care is not practicing stoicism.

Helping Others

If you looked over that podmapping exercise, you would notice that it isn’t just about who can help you. It’s also who you can help and how. Do something for someone else. Are the stores out of toilet paper, but you maybe went a little overboard on preparing? See who you know why needs a few extra rolls. Are you coping by baking, and aren’t sick yourself? Offer some of those baked goods to a neighbor. Are you going to the store? See if someone needs one or two things you can pick up.

If people in your life have identified themselves to you as being high risk, or have needed to isolate or quarantine. ask what they need. Then listen.

Healthy folks aren’t the only ones who can be helpful. NO, if you’re very ill in bed on a ventilator, you have absolutely no place helping others. Your job is to just accept help as it is offered. But even those of us who are compromised are often able to help others in some way. I’m reliant on others to do my shopping and wash my dishes. But Just last night I was able to talk with two folks on the phone and hold space for their grief and fear about their elderly parents. I’m a great problems solver, and disseminater of information. I have a car I can lend out when a friend needs one. And I have a surprising number of cupcake tins. And a Bundt pan. Please don’t buy a Bundt pan. Borrow mine.

Self-care

I’m not talking about Instagram-influencer-capitalist self-care. I mean what keep you the most OK you can be. Eat good food if you are able. Drink water. Take a breath. Tune out of media and conversations that are unhelpful and fear mongering. Exercise in a way that is appropriate for your situation. Stretch. Read a book. Tune out for a while with TV or a movie. Get clean. Change your clothes. Ground into your body. Laugh. Play a game.Spend quality time with your pets.  Listen to music you love. Cry if you’re sad or scared.

This is also a good time to figure out what some self-soothing tools like like for you. We know that one of the best ways to get our nervous systems to calm down is to regulate with others. You might still have that option if you like with loved ones and no one in your household is ill. But, especially if you like alone, this is much harder. Give yourself a hug. Deep breaths. Find a mantra. Hug a pet. Hug a stuffed animal – even if you’re an adult! No one is watching.

This will get more real

Rinse, and repeat all things things as needed. We’re still at the beginning of this pandemic. Many of us will be, but not everyone is going to be OK. And remember, there are lots of effects playing out, like product shortages, threats to small businesses, impact on elections, etc. Lots of things will be hard.

When folks who are at high risk are afraid, they have good reason to be. Don’t rush to reassure or try to make it better. Don’t gloss over their feelings because of statistics, or because the idea makes you uncomfortable. Instead, try listening to their pain and fear if you have the bandwidth.  Just be with each other.

Take all the precautions you know by now are appropriate and necessary. Do everything you can to protect the vulnerable folks in your life. Wash those hands. Ask them what precautions will make them feels safe. Notify them if you come to find out you were exposed, or if you become ill.

Do not over buy things you don’t need that others do, unless you’re buying them specifically to make them accessible to folks who need them. Lots of folks use masks and alcohol wipes in their daily lives. Many of us have dietary restrictions at play when we are faced with empty grocery stores.

And the bottom line, is we just can’t control what happens. All we can do is get honest with ourselves and out loved ones, and figure out how we do the best we can to make it through together. It’s going to take all of our big hearts and deep breaths.

 

You might also be interested in:

For more thoughts on how we can support each other in hard times, check out some of my other blog posts:

Supporting Each Other: Part 1 – learn some tips on who you can dump on when someone’s going through a hard time.

Supporting Each Other: Part 2 – tips from Celeste Headlee on listening

Supporting Each Other: Part 3 – thoughts fro Heather Plett about how to hold space for each other

For resources on chronic illness living, and disease-specific information on MECFS, check out my Chronic Illness Resources page.

Reading List: January and February 2020

Photograph of the cover of "The Water Dancer" displayed on a tablet.
Photograph of the cover of “The Water Dancer” displayed on a tablet. The tablet sits on red sheets.

My brain has been pretty good so far this year, which is always just a roll of the dice. I’ve probably been able to read at some point every week. I always count my books in the year I finish them, which is a little bit of a cheat, since I read the bulk of my first book this year in December. But, at least I’m consistent.

I don’t make up rules about my reading; I’m grateful to be able to read anything, and what I can read changes based on my cognitive abilities. But I do try to be conscious of whose voices I read. Part of that is about making sure that I’m reading books by BIPOC (Black, Indigenous, People of Color) folks. If you’re a white person who reads, and you aren’t currently paying attention to this, I recommend you do an inventory and some noticing.

Here’s my list so far this year:

On The Come Up by Angie Thomas

I’ll admit, I didn’t love Angie Thomas’s second novel as much as her first. But it was still a good read.

Bri is a 16 year old Black young adult with big dreams of making it as a rapper and changing her future, and that of her family. She’s living in the shadow of her deceased father, who was a local rap legend. She idolizes him, yet also wants to stand on her own, and be seen as her own person. Her dreams are big, and the kind that others often brush off as impractical.

Her voice is her power, but it is also a thing that can get her into trouble. Being a talented Black woman being bussed to a predominantly white school creates a lot of opportunities for conflict and misunderstanding.

Her Aunt has her back, but makes a living as a drug dealer, and affiliates with a gang. Bri wants a world where her aunt has a different life.

Hey mother and brother and friends are there for her, but of course they each have their own agendas and opinions.

Bri isn’t going to let anyone hold her back.

4 out of 5 stars (4 / 5)

 

The Water Dancer by Ta-Nehisi Coates

I was excited to read this, and encouraged by a friend who raved about it. The first couple of chapters were hard for me, and might be harder for folks with more brain fog. But I’m so glad I stuck with it.

I would describe the book as an imagined story of slavery and the underground railroad. It is heavy and magical. Full of intrigue, spy craft, analysis of power and inequity. A deep dive into slavery, and to emerging magical abilities.

I’m not sure what else I can say, I think it’s better for the reader to see it unfold.

It’s definitely one I recommend, and my only 5 star rating so far this year.

5 out of 5 stars (5 / 5)

 

Notes to Self by Emilie Pine

I love memoirs. I don’t generally like collections of essays, just like I don’t like 22 minute television episodes. This was deeper than some, which I appreciate. But something about it didn’t quite capture me. I love that it dove into topics that are real, hard, and not often spoken about, like addiction, sexual assault, family trauma, infertility.

“Publishing these essays has not made me a different person. I still listen too frequently to my inner critic. I still get angry. I still get afraid. But in writing about all the things I felt I could not say, in breaking the unspoken rules of shame, I have changed how I tell my story. And in doing so, I have learned that breaking the silence is not about bravery. It is about what we choose to do with our vulnerability. Vulnerability is not one thing, healing is not one thing, authenticity is not one thing; they are individual, and they are complicated, and they are radical.”

But I tend to seek out those stories, and I guess I’ve liked how others tell them a bit better. I read it partly because of Glennon Doyle’s recommendation, but it was a little disappointing. If you haven’t read much in memoir form on those topics already, you might appreciate it more.

3 out of 5 stars (3 / 5)

 

So B. It by Sarah Weeks

“Another thing I found out right around that same time is that not knowing something doesn’t mean you’re stupid. All it means is that there’s still room left to wonder.” – Heidi

I like to read some young adult novels once in a while, as they can be easier on my brain. This was such an interesting ride! A young teen, Heidi, lives with her mentally disabled mother, and survives with the help of a kindly agoraphobic neighbor. Heidi has a lot of questions about her history, but her mother has an extremely limited vocabulary, and can’t answer any of them. A quest for those answers, to know who she is by where she came from, ensues.

4 out of 5 stars (4 / 5)

 

The Moment of Lift: How Empowering Women Changes the World by Melinda Gates

“If you want to lift up humanity, empower women. It is the most comprehensive, pervasive, high-leverage investment you can make in human beings.”

The Moment of Lift was a major player in my library roulette game over a period of six months. I put it on hold, got it, they took it back, I put it on hold, go ti, they took it back, repeat. Maybe six times. I am glad I stuck it out.  It is denser reading than some, so brain fog folks beware.

I do not know how to describe or summarize this book. Part of it is a memoir of Melinda’s life, including her childhood, time at Microsoft, and relationship with Bill.  Part of it is a story of how she, and Bill, have decided what is important to them. Part of it is a story of privilege and humility. And part is a story of the very real impacts of changing women’s access, education, resources and social standing changes the world.

Some of the anecdotes really stuck with me. I appreciated the ways in which Melinda learned that people know more about their place, their community, and what appropriate solutions are than she ever can as an outsider. I enjoyed the stories of when The Gates Foundation chose to allow scope creep in their funding, because they discovered the problem and solution were not what they thought.

My favorite story was at the end of the book, and since I don’t have it here to reference it, my telling will be questionable.  But the gist of the story was a series of learnings in attempting to work with female sex workers in India to reduce HIV transmission. One learning was that condoms weren’t the answer, but what was really needed was a community solution to violence. The women organized a system for a phone tree that could be triggered when a woman was dealing with violence. A group of women would immediately assemble to witness and provide public pressure, accountability, and probably shaming on the perpetrator. I’ve wondered how community solutions like that might work here in the US in our community for various issues.

“When women are trapped in abuse and isolated from other women, we can’t be a force against violence because we have no voice. But when women gather with one another, include one another, tell our stories to one another, share our grief with one another, we find our voice with one another. We create a new culture—not one that was imposed on us, but one we build with our own voices and values.”

4 out of 5 stars (4 / 5)

 

All in all, it’s been a good start to the year. And I’m already into another book that’s gotten rave reviews, with a few more in the queue.

Favorite Reads of 2019

Bitomoji image of Rebecca reading a book
Bitmoji image of Rebecca reading a book. The character has a relaxed red mohawk, black framed glasses, very pale white skin, and is wearing a black hoodie, gray shirt, and black pants. She’s holding a red book, leaning against two pillows.

I set an ambitious book goal for the year. I did not come even close to achieving it.

The most important thing to know about my reading experience, is that it based on a game I like to call “library roulette.”

Almost all the books I read these days are electronic, and almost all of them come from the library. I read on a Lenovo tablet using the Kindle app, and primarily use the Libby app for managing loans and holds.

I have two library cards. Most obviously, I have a card for my local Finger Lakes Library System. They have a modest selection of ebooks, allow 5 loans and holds total at a time, and allow loans of up to three weeks. As a New York State resident, I also qualify for a card from the New York Public Library.  They have a pretty robust selection of books, allow for a total of 15 holds and loans at a time, and allow loans of up to two weeks.

The way you get recent, popular books it to search and locate, then place a hold using the appropriate library card. Putting a popular book on hold might mean a wait period of six months or more.That book then shows up ready for download whenever it becomes available. It is then magically taken away as soon as the loan period expires. When other people are waiting, you cannot renew.

No matter what the estimate says when you place a hold on a book, they show up at the whims of the library gods. So, you might have no books. Then you might have 5. In fact, this just happened to me. And while typing this, I just received an alert that book #6 has just been borrowed. Which there is simply no physical way I will be able to read.

This is not the best system for someone with chronic illness who can’t always concentrate enough to read. And it largely removes the ability to choose what one is in the mood for.

That said, the fact that I read more than 20 books playing library roulette while chronically ill feels like a win. And I’m racing the clock to try to finish On the Come Up by Angie Thomas before the end of the year.

I read a bunch of books, and that’s a thing that many of my MECFS comrades cannot do. So, I’m grateful. 

Here’s my list of favorite books I read this year. There was more fiction in the mix than usual.

Fiction: 

  • City of Girls by Elizabeth Gilbert. This is the most fun read I’ve done in a couple of years. The characters are quirky and fabulous; woman who were charting their way and participating in unconventional relationships and creative outlets.
  • Homegoing by Yaa Gyasi. This novel was recommended by Rachel Cargle, as a way for white folks to understand the generational impact of slavery. It is one of the most compelling books I’ve ever read. Her writing is gorgeous. I wrote about it here.
  • A Woman is No Man by Etaf Rum. This was a very emotionally difficult read. If you can’t deal with women in pain, I don’t recommend. I wrote about it here.
  • If, Then by Kate Hope Day. A surreal read about possible paths.
  • Swing Time by Zadie Smith. This novel takes places in several locations, and explores a number of different aspects of privilege. 
  • Mr Penumbra’s 24 Hour Bookstore by Robin Sloan. Fun! Nerds! Books! Secret societies!
  • The Library Book by Susan Orlean. I wrote about it here. A strange story about a strange man, interwoven with a great exploration of libraries, and their roles and evolution.
  • The Library of Lost and Found by Phaedra Patrick. A fun and fluffy adventure about family secrets and baggage.
  • A Man Called Ove by Fredrik Backman. Yes. I was a little late to the party on this one. Thoroughly enjoyable.

Non fiction: 

Reading List: She Said

Cover of the book "She Said"
Image Description: Photograph of the cover of “She Said,” as displayed on my tablet. The tablet rests on a rich red comforter.

I love finding books that stay with me for a very long time. One of the best compliments I can give a book is to say it was horrible. By which I mean, the book revealed and chewed on something with such depth and thoughtfulness, that it brought the full horror of a situation fully to my consciousness in a way I can never turn away from again.

While I have read a number of very impactful books, the ones that rise to this level for me tend to come from investigative journalism.

There have been two books like that for me in the last couple of years. The first was “Doing Harm” by Maya Dusenbery. It’s an in-depth exploration of how the entire medical system had been failing and gaslighting women. From so-called hysteria, to using only male mouse cells in research labs, to not testing drugs on women, to how inherent bias results in women being under treated for pain.  As a woman who has had a very difficult time navigating the medical system, despite privilege, and has currently incurable illness that is wildly underfunded, the book hit a bit close to home.

The second, I just finished, “She Said” by Jodi Kantor and Megan Twohey.

Jodi and Megan are the journalists at the New York Times who published the Harvey Weinstein expose. This book tells the story of their investigative process, and of the way a man and his co-conspirators terrorized and harassed women for decades, and got away with it. 

It also grapples with the impact and outcomes from that article. It examines the journey of Christine Blasey Ford, as a test of whether cultural change is actually taking place now that women are feeling more emboldened to speak their truths. Are we different? Are these women different? How are our stories the same across many other cultural divides, McDonald’s worker and Hollywood star alike?

I am a strange combination of cynical and naive. Of course men in power can do horrible things and get away with it. But I had not grappled with how many people have to be actively facilitating that behavior for it to continue for decades with little consequence. This was the horrible.

So many women have signed away their voices in non disclosure agreements, being assaulted or harassed and never able to warn their coworkers, or tell their spouses, without potentially dire consequences. The amount of this was also horrible.

I have a bias in favor of journalists, and that was only reinforced. Jodi and Megan, and many others did thorough due diligence on this story, and gave incredible time and effort to get it right. There is simply nothing to dispute.

And for perhaps the first time, the epilogue gave me goosebumps. I’m not going to give that away. But the power and potential was potent.

I cannot recommend “She Said” enough. It’s horrible.

Movie Adventure

Photograph of the front window of Cinamapolis at night. Basic signs are visible, and you can see though to the lobby.

I went to the movies for the first time in about 16 months! My friend and I met up at @thecinemapolis to see Downton Abbey. Fun, fluffy, entertainment.

Last year I was lying in bed one day fantasizing about going out in the world on a bed carried by my friends. I had a revelation that the right wheelchair might work kind of like that. And last night I found myself lounging in my portable recliner, aka my wheelchair, at the movies.

There are some things that still aren’t streamlined well about using my chair. And those bits are still using more energy than I like. But I was able to recline my chair back, use my headrest, and put my feet up on the elevating leg rests for the duration of the film. I was able to keep my heart rate down almost the whole time. ❤️

I made progress on the logistics front. The poncho now has a home in the bag under my chair, as does the rain sleeve for the joystick. I carry a headlamp now, and it was right where I needed it for the roll back home in the dark.

What wasn’t great: The doors at the theater are very difficult to open while in a chair. I had help from my friend with the entry. But the door for the accessible restroom was very heavy and difficult. I broke part of my headrest backing into my chair space at the theatre, so I need to investigate that. I was worried about people walking into my extended legs in the dark in the theatre. Luckily, that didn’t happen. And luckily, by coincidence, I was wearing my Chucks, so the white toes helped. I think it would be good to have some glow in the dark tape or paint on the end. And it would be smart to have reflective tape on my chair. The most stressful thing was coming home and getting stuck, repeatedly, on a curb cut that I thought was safe. If I hadn’t managed it on that 7th try, I would have had to travel in the street. Which makes me nervous.

But overall rating of the evening, 7/10. Would do again.

Communicating About Chronic Illness

Photograph of a rotary telephone on a tree stump in the woods
Photograph of a beige rotary telephone on a tree stump in the woods. There is moss on some of the stump, and dead leaves on the ground.

I am a member of quite a number of Facebook support groups for my illnesses, particularly ME and POTS. One of the biggest themes I hear from others is a struggle to be heard, understood, believed. I don’t often have that problem, and I think there are a number of reasons for that. One is communication tactics and skills. I know that folks with chronic illness, ME in particular, often suffer from cognitive compromise. I’m doing better than many. But there may be nuggets in here for anyone to apply.

I suspect that others may complain about their symptoms and want sympathy or empathy, and understanding that many outsiders have difficulty with.  I certainly suffer in my everyday life, but it isn’t the focus of my communication with folks are are newer to my situation. Instead, I try to frame things in the most objective way I know how, with support from the emerging science on my illnesses.

Explaining complex diseases that are poorly understood is not something that comes naturally to me as an 11th grade science drop out. But I am good at synthesizing information and re-packaging it. So that’s what I endeavor to do, constantly evolving as my understanding changes, and as science makes new discoveries.

Here’s a theoretical conversational scenario if I’m explaining my health situation to a new-ish friend, or a family member who doesn’t know much about it.:

Myalgic Encephalamyelitis (ME) is sometimes called Chronic Fatigue Syndrome.  I think some doctors have used it as a garbage can diagnosis, when nothing else fits. But it is a distinct disease, with distinct diagnostic criteria. While science is still actively working to understand it, with research centers at places like Cornell University, Stanford University, Harvard, NOVA Southeastern, and the Bateman Horne Center, there are some things that appear to be true.

One, is that our energy production and usage systems are simply not working right. I don’t have the ability to generate energy normally, and I don’t have the ability to use or regenerate energy normally. Every activity I do requires more energy than it does a normal person. One way we understand this is that our bodies switch to using anaerobic energy at thresholds much lower than the normal population. You know how runners switch to using anaerobic energy for a sprint? My body does that from making toast. I had a test done that measure what my anaerobic threshold is from a perspective of heart rate in beats per minute, and it’s 86. For perspective, for an average woman my age, that number would be around 175. In order to prevent overusing energy I don’t have, I’m supposed to stay below that number (actually even lower) as much as possible. That’s why I wear a heart rate monitor all the time. Depending on your hearing, you might hear it in that background sometimes while we’re talking.

Any time I go over my anaerobic threshold for an extended period of time, or too often in the course of a day, I’m at risk of post-exertional malaise (PEM). It’s the distinctive hallmark symptom of ME. It causes me a lot of pain and even more exhaustion than I normally have. It can also make my health deteriorate over time.

There are a lot of other illnesses that often come hand in hand with ME, and I have several of them. One of them is POTS. It’s a disorder of the autonomic nervous system. Basically, my body can’t respond well to gravity. When normal people stand up, the nervous system pushes blood back up through the body – that’s how the brain gets oxygen. My body doesn’t do that correctly. So my heart races to try to help bring the blood back up. It happens every time I stand. I take several medications to try to keep my heart rate down. This is a very tricky complication to my heart rate monitoring and pacing. POTS also does other things to my body, like make it difficult for me to regulate my body temperature. In my case, I tend to be hot when others aren’t. Except for when I’m inappropriately cold. 😉

I also got another fun acronym, called MCAS, for Mast Cell Activation Syndrome. It’s like I’m having an inappropriate allergic response to things in my environment, like chemical scents, or foods I eat, particularly those with histamines in them. I get sinus problems, an elevated heart rate (notice a problem pattern), and IBS if I eat problem foods. Which is most foods I particularly like. So I eat carefully off a low-histamine food list, and I take medications and supplements to reduce the impact of triggers.

ME causes pain, overdoing it and getting PEM causes pain. And for more pain options, I also got Fibromyalgia! I take supplements and prescriptions to try to keep the various pain problems to a manageable level. Some are preventative, some are reactive.

In my experience, explaining the lay of the land to folks with that sort of a starting foundation goes pretty well. People might ask a variety of follow-up questions. I might describe my day-to-day life, share the impacts, tell folks I’m generally housebound, and spend most of my time in bed, use a power chair when I leave. But I’ve started by giving them the fundamentals of why.

Here’s a different kind of approach I might use when talking with a health care professional:

First, I always take a printed, annotated list of medications and supplements to any appointment, in addition to a 2 page handout from ME Action that nicely summarizes the disease. If I think I might need proof of ME for some reason, I take a copy of my 2-day CPET report that explains the testing I’ve had, how they determined my anaerobic threshold, my level of impairment. etc..

In an appointment, I usually have to check in with either a doctor or a nurse about their knowledge of POTS and their knowledge of ME. I usually do that by saying something like:

Are you familiar with POTS? It stands for Postural Orthostatic Tachycardia Syndrome. It’s a disorder of the autonomic nervous system, when my body doesn’t respond well to gravity when I’m upright. My heart races to try to pump blood up through my body, and I have a number of other autonomic irregularities that come with it, like problems with temperature regulation. I do NOT have low blood pressure. I take the following meds to try to keep my heart rate down. If anything, my blood pressure is slightly low. If you get a high reading while I’m here, it’s probably as a result of my Orthostatic Intolerance.

Are you familiar with the current research and understanding of Myalgic Encephalomyelitis? It used to be more commonly referred to as Chronic Fatigue Syndrome, but it is a specific diagnosis with a specific set of criteria. There are many problems with our energy systems, which researchers are currently working to understand. One way we understand this is that my body switches from using aerobic to anaerobic energy at an incredibly low threshold. I was tested to understand mine, and my AT is 86. I have that report with me if you’re interested in all the details. I’m wearing this heart rate monitor (you might hear it buzzing), to try to keep my activity under that threshold as much as possible. But that is very difficult.

I’m generally housebound, and spend most of my time in bed. I will exceed my limit making toast. I need daily help around the house to take care of basic tasks, and I currently need help bathing. It is very difficult for me to come to appointments like this, and my primary care doctor comes to my home. You’ll never get an accurate resting heart rate reading here, because I’m doing too much work to be here. My actual resting heart rate is in the high 50s to low 60s. You’re unlikely to get a number below 80 or 90 while I’m here, and it will take me several hours to recover back to my resting heart rate. Because I am over my AT for much of a couple of hours to be here, it could take me a week or two to recover from this appointment.

So that’s a glimpse into my ramblings; contextual and long has always been my style (including when I was a professional trainer).

If you’re interested in the ME Action handout or how I manage doctor’s appointments, browse over on my Chronic Illness pages.

Are there ways that you approach these conversations that you’ve found particularly helpful?

Staying Connected to the Outside World

Cascadilla Falls
Cascadilla Falls, From just above the stone bridge. A man sits on the wall of the bridge. His back is to me, and he’s playing a guitar.

Until I was too ill to go out much, I walked through my neighborhood every day. I walked to work from 2008-2016. I got a dog in 2014. I have a deep connection to this little part of the world. I met neighbors, made friends, and spent heaps of time at one of my favorite waterfalls; where I live, they’re part of the urban landscape.

My hand holding a box of freshly picked raspberries at Indian Creek farm.

I’ve been a hobby photographer for as long as I can remember, and have been taking pictures on my walks from the beginning. Even now, as I go outside to practice navigating in my wheelchair, I’m still stopping to take pictures. I have an immense collection of photos, and I have often used them to reference the timing of things, like when the magnolias bloom, and when the blueberries will be at the farmers market.

Brighly colored flowers in a tree lawn garden.

I miss being outside. And I miss being engaged with the world and the change of seasons this way. A few months ago I had an idea. I decided to make slideshows of photographs I’ve taken locally, a new slideshow for each month. And I use them as screensavers on my TV. It reminds me of what’s going on outside, and what I would see just a few years or blocks away if I stepped outside.

A white and black shorthair cat lying in a garden.